Hung out with Dad for bit (pg. 18)
Finally got to see my Dad, he looks great barely hard wired, I am more than he is. Today I got the moment with out tears (mostly cause it would hurt to much) that I was able to look at Lynne and say we are on the other side now. Recovery not much fun man it feels good be alive, just to hear my Dad say thank you is all I ever need. Enjoy your New years everyone and raise a glass for us, and know that it is the power of the happy thoughts that became words that became actions that brought us here! Cheers and thank you!
Liva Deliva'd (pg17)
So this is to the best of my recollection and I am high as a kite right now. Yesterday started at 545am with a group hug and off to Lahey from the hotel. We get there an by 630am I am Johnnied up and I got the same Nurse Wendy to begin the knocking me out process, I meet Igor the Anesthesia dude, he inserts some IV's and I wheeled into the OR. All remember was the 3 giant lights above my head and passing out. I came to in recovery and I was not in any real big pain just very confused. I got me an Irish Nurse named Debbie she was cool beans and exactly what I needed. She took excellent care of me, gave me a sponge bath brushed my hair and was a total love Being that I have never been in the hospital and I was alone it was nice to have some one very compassionate. I remember talking briefly to Lynne about Dad. I still have not seen him and no one else for that matter, this was he first time I really felt alone and really scared not know what to expect and being on drugs also an experience I have never had. Apparently I make every laugh here, one the Doc's who is here on Fellowship I asked him if he was a Fellow or a Funny Fellow. I told him I would do this again. Truth is I would,he told me he was Beligium, me I say oooo they make great chocolate there.They moved me out of the Recovery area up to the "floor" I had a cathatica and was compliment numerous times on having phenomenal urine. Really!?! Who knew, guess I should add this to my on line dating profile now. Hmmm, well since I am such an optimum pepe'r they took the cath out. I sat up today in a chair and in constant clicking of m pain med button. O I have these really neat leg massager things, they help prevent clots but I like to think I am have a Pedi, minus the paint job. My day today very blurry sleep for maybe 2hours at time cause well everyone is still touching me and looking at me. I am heavily drugged have not seen my Dad at all yet, goy more texts than a teenage girl and for about 10 minutes I thought I was in a physc ward, some lady scream HELP she was bleeding to death (she popped her IV) another one was moaning and the rest of the sound were just way to much to for my drugged induced little head. All I want is to see my Dad and have some laughs cause though Lynne, Tommy,Uncle Mike, my brother and his wife have been around there is still something really lonely about being in a hospital, let alone trying to sleep. WTF is wrong with everyone don't they know the Princess delivered a liver and needs her beauty sleep.. geez! I still got an IV intake in my neck ya it is really narly and one shoved in my hand for "outake" my pain is pretty intense even with pain med's there are moments where the only words that work are "this fucking hurts!" I got a drain bulb it's really gross, but what I got from this was and is the greatest gift..to see my Dad continue to live, this really was a little self fish on my part cause well not ready to walk the planet with out him being on it too. Well that's all I got cause these pain meds make me itchier than a crackhead on Weld Sqare and I think my eyes are crossing. My spelling and grammar must be horrible too...o well...awe dam it here she comes again "Grace" she is my CNA tonight kinda gramma like to what else touch me again, maybe she will fix this neck tape it is ripping at my baby hairs...arrrgg...k peeps be back at ya when I got some thing new and funnier...For those of you wishing to visit we are on the 6th floor, I am room 36 Dad should be up tomorrow...for the rest of RAISE YOUR GLASS for me and for us...we made it and Karma is a beautiful thing...
The song for the night.......This is me and my Dad's "song"
The River Garth Brooks
This took me 2 hours to type..lololololol..computers and pain meds dont mix
The song for the night.......This is me and my Dad's "song"
The River Garth Brooks
This took me 2 hours to type..lololololol..computers and pain meds dont mix
Blizzard!?! O Mother Nature you are sooo not funny!! (pg15)
(written from another waiting room at Lahey)Uhuh so we get a dumping of snow,all our appointments are moved to Tuesday. For Christmas what I thought that my son had was from eating something bad turned out to be a stomach bug which he so kindly shared with me! Ah yes 24 hours of porcelain god worship and hardly any sleep. I am quite the tired and cantankerous one today while at Lahey having Pre-op labs and more redundant meetings. I met my surgeon the other set of hands (I will fill in his info when I am so cranky)that will be working on me tomorrow. He took me into another room for private chat to let me know that it is ok to opt out of surgery for tomorrow since I feel like shit. Part of me says yes cause I feel horrible but the other part of me says o hell no I have things to and I want to done with this and move on. This journey has been long and just for today I feel beat,weak and wanting to just be left alone. I don't want to talk to anyone anymore about what if's and all the other crap that goes with it. Just for today I need rest and solitude and tomorrow is Go Time. We are staying at hotel over night which was not my idea though it makes sense. I would prefer my own bed on the night before the scariest endeavor I have ever decided to do. So thank you everyone for your well wishes, the next time you hear from me will be when we are on the other side of this and beginning the new journey of recovery.
Christmas (pg 14)
Now if I thought I would get some reprieve from the Lahey Clinic just for a few days I was wrong. They felt the need to send me some comedy via US Postal Service yesterday. After all the Vagina Monologues I did agree to do a follow up with them after the deliver of the liva just to appease them. Ya well I got my appointment letter in the mail and I nearly hit the floor in hysterical laughter when I read the doctors name. I am telling you folks my life is a sitcom and I could not make up half of this ridiculous stuff if I tried, so with out further babble, are you ready?? Ladies and Gentleman I have an appointment on 1/25/2011 with Dr. A. Dick, MD. Since this is a family blog of sorts I will refrain from further twisted hysterical remarks and leave you all to make your comments and enjoy the ironic laughter. I will say I am curious, at what point in your life do you decide that you want a profession in OBGYN with such a name. If this did not come on official Lahey appointment letter head I would think my buddy Maria was punkin me. O and let's not forget Mother Nature deciding to send us a snow storm tomorrow which will impede our trek to Lahey for Pre-op, now this is when I wish I had a big plow truck, really gonna suck if we have to stay at a hotel in Burlington just to have 3 hours of time in Lahey on Monday. Now back to Christmas....
Remember it is not what get it is what you give....
Christmas Eve this year for us was quiet. To quiet, I felt last night was more like being in the glooming rather than rejoicing for what is about to happen, hardly anyone came over. Our house used to be the where everyone came for Christmas Eve, but times are a changing. My poor son ate something bad and spent Christmas eve singing Christmas carols to the porcelain gods till 3am. Just did not feel like any Christmas I am used to. I am not apprehensive about any of this, after meeting the Sullivan's I have never been more sure about something that to others seems ominous, I just want this over with as I have places to be and things to do, many doors are ajar for me just waiting for me to push them open, now being a person of little patience you can imagine how much I want this done now.
My recovery will not be as intense as my fathers will be, though both of our surgery's carry severe risk I am quite confident that the next coming year will be filled with many more humorous and triumphant stories. I am told with in 3 months it will be like it never happened minus the mid line scar. Somehow I do not think I will ever have a day in life again that I will not be humbled, inspired, or forget what this journey has given to my soul. Unlike many people that have tattoos', I have no tattoo's but I will have a scar that will be a conversation piece for the rest of my life and it is a tattoo of sorts that will remind me always that life is meant for living and taking risks, some calculated and some just flying by the seat of your pants. As long as you always remember that even when every thing seems dark, there is light and every risk is an experience that was meant to teach you something. I am still ever learning and letting go of the things that do not serve my happiness and sometimes that means letting go of people as well, because the truth is that if someone can not support you and be there for you in the darkest hours and handle the worse of you they do not deserve the very best you either.
We have one more day of Pre-op testing on Monday, my brother and sister-in-law are driving in from Michigan to be here for the surgery and today I will spend some time with my family and share some laughter, because if I learned anything throughout this journey it is to keep the laughter going, laughter truly is the most natural of healing and cures for anything.
So enjoy your families today everyone and take a minute to look around the room at everyone of your loved ones and remember why you love them. Life is precious don't waste it, say what you mean and mean what you say and love as if you will never be hurt!!!
MERRY CHRISTMAS!!!!!!
3am Thoughts...Sleep?? Really? Whats that? (pg12)
"Life is merely the sum of all the memories in which you create for yourself. Some good, some bad but it is the one's that leave you breathless and make your heart smile that matter the most." (ME)
What I have learned in the past 2 years about what matters the most is not something you can learn in a book. I have taken many risks in my life, some calculated, some flying by the seat of my pants but for every risk the experience and the wisdom I have gained is what has given me the courage to do this for my Dad.
I have met so many amazing, gifted, loving, silly, gentile, brilliant, intelligent, beautiful people along the way and every encounter has only enlightened me and made me know that life is very precious and if you have the opportunity to give something back to others and you don't, you are truly missing out on what living is about. It is not about destinations it is about the journey, it's about how much light you allow into your life. No one person is a Saint or a Sinner we are all connected in some way, and just when you think your alone, guess what there is someone else that "gets it". I truly believe that the people you connect with whether the encounter is brief or lasting, somewhere there was a divine plan for you to meet.
I am truly grateful for Lynne my stepmum, for all that she is and for all that she is not. What we have been going through together, though alot is unspoken I could have never gotten through all this testing with out her. She has supported me, listened to me bitch, cry and just knew how to sit in the beautiful comfortable silence that we all sometimes just take for granted. She "gets it" even when I don't give her that credit of "getting it" she does, and if anyone is super human it has to be her. Dad in spite of how debilitating his disease is, he has laughed with me every day and every day he makes the effort to keep fighting when most would have just given up. Watching this disease eat at him every day has ripped my heart out, but it is the laughter that we share everyday that mends me. I am grateful for my Ladies that have "covered me" and let me just come undone, Cindy Ohara-Hamel, Elizabeth Shaw, Kathy Glass, and Wendy Medeiros you ladies have been my light when everything felt dark, listen to me babble, made me laugh, hugged me (which you know how I am not a touchy feely person) and have come to find me when I was lost. I am grateful for everyone that has come close or has offered positive thoughts to the universe for us. For every positive thought that was sent out, we are finally getting to what we need, so keep them coming!! I believe this quote sums it up best..
"In the end, though, maybe we must all give up trying to pay back the people in this world who sustain our lives. In the end, maybe it's wiser to surrender before the miraculous scope of human generosity and to just keep saying thank you, forever and sincerely, for as long as we have voices."(ELP)
I have received numerous accolades since this all began, truth is I am scared as anyone should be. I do not feel that I am "special" in any way. I am the proud daughter of a man that many adore and he would do the same for me, after all the apple never falls far from the tree and if you have the pleasure of knowing my Dad, than you know what I mean, he is kinda bad ass and this world needs his light.
I would hope that anyone in our situation would do the same for their family member. Although I have learned that many would not, makes me sad to think that selflessness for some is throwing money in the red pot out side of Walmart at Christmas time. I suppose the ole cliche of "It takes all kinds to make the world go around"has validity but I would rather not be associated with those types, thanks.
So these are my thoughts at 3am I needed to tell, because, well I am Mellie and I got more layers than an onion.( Good gawwwd, whats with the cliche's all of sudden?? lol) and as my theme song of the month goes.."sometimes we carry more weight than we own and sometimes, it goes on and on...but I am good with that, I take pride in knowing that I am one of those people that can carry the weight for others when needed.....all ask is bring chocolate, cause, well chocolate makes every thing better.....
(link below to my theme song of the month)
Sometimes- CandleboxDivine Intervention (pg13)
This day started at 5:06 am with Lynne asking me if I was awake, well I was sort of, all I know is I woke up kinda cantankerous, I was in the space between where you remember your dreams. I was having a conversation in my sleep about...ya that's another blog all together, single for good reasons here people!!!! Anyway after I throw my self out of bed and rush to get ready for 530am drive,(did I mention I am not a morning person?) I get "Mel, where's your extra key?" Ya uhuh Lynne who has been multitasking somehow locked the Jeep with it running. Cantankerous already and high tensions this early was not so good. Call AAA? Oh please they take hours to get to you, so we called our town's police department and with in 10 minutes we are in the Jeep on the road. I think we did laugh at some point but I hid in my Ipod and slept.
Arrival half hour late Lynne, Dad, and I (barely awake) get a Nurse in Pre-Op that was less than pleasant, she sends us to the lab, which me who is so well schooled and my People Denise and Maria are very meticulous about my schedule I knew this was wrong. So I appease the Cranky Nurse lady and head down to the Lab but email my Denise, she "fixes" the situation and we are sent back to meet another Nurse to get tutored on Anesthesia and sign consent , again I just feel this is over kill, I tell 'em. I will be asleep right? For 7 hours pretty much? Ya ok good where do I sign? Really I understand all this need to tell, but me I live in don't ask don't tell. I will ask what I feel I need to know. Any way I learned I will be wired like a car engine with a port out of my neck, intubaded , have a catheter and have a drain sticking out my belly just below the incision and some other iv's...YEAH ME!!! So I listen to all this information that just seems to swim all around my head. All I know is I will be sleeping when they are hooking me up and unhooking me except for the pee bag and drainage pump thingy. I will wake with 2 IV's and a pain med pump. My father was in the room next to me getting the same information. Already on information overload I have to read the what "could happen" consent form...really!?! I definitely did not need to know all of the complications of anesthesia on top of this major surgery. I, still being tired, am now feeling unnerved again.
Dad and Lynne head down to Xray and I head to my People for some giggle time. This was the most defining moment for me today yet.
I am chit chatting with Denise and I meet Lisa Sullivan, who is 2 weeks post LIVE LIVER DONATION. She donated a piece of her liver to her husband Sully, what a beautiful moment for me, to finally meet someone who just did what I am about to do. She shares some of her story and shows me her incision (totally not as bad as I envisioned) I cried just because, we group hugged and than we laughed like hell. Lisa was feeling queezy as this is a side affect of the surgery so she needed to go get some sustenance. Chatted up with Maria, Denise and Lois for a bit longer and went to the waiting room, where I met Sully Lisa's husband and her parents Pat and Dan. Lynne and Dad arrived and the conversations began to unfold. We learned of all the things that will happen after surgery from the Sullivan's from Essex Ma. It was enlightening, comforting and very cathartic to meet Lisa and really get a good read on what I should expect. I know Lynne and my Dad were also pleased to meet with them hear their experience. We also met a Greek gentleman that I cant recall his name but he shared his story. He was the 8th person to receive a liver from a live donor, his sister. Today by far was the best day, these are the moments when you realize you are not alone. That we are all connected in some way and divinity has away to bring you what you need in times of worry and deep concern. I have exchanged information with Lisa and am excited for her to share her story on this blog with all of you. What is really funny is that Lisa and her husband Sully, very much share our sense of humor and candor. I truly believe they were there today to help us really be ok with everything we are about to experience. As much as my people like Denise and the doctor's have been informative and helpful, in this situation I encourage everyone to seek out a family that is like yours in personality to share their experience with you, Denise did offer for this to happen, but I think we get so wrapped up in all the testing and worry that you don't think that anyone else can relate or perhaps it will be to scary to hear. Well I can not express enough my gratitude for the divine intervention of the Sullivan's being in the office today. To have another person agree and relate to all that I have gone through in my own head was, ya made me cry. It as good for Lynne to talk to Lisa's parents to hear what they went through and for my Dad to talk with Sully and crack jokes.
The rest of the day, while I love chatting and goofing with Denise I just felt the rest was redunandcy as nothing could compare to the meeting Lisa and Sully. Except for one thing, meeting my father's surgeon James Pomposelli MD,Phd, FACS Surgical Director, Transplantation.
He is the husband of my surgeon Elizabeth Pompfret, MD,Phd, FACS,Chair, Department of Transplantation.
Now there is something I find very comforting about this and amusing. Dr. Pomposelli is just as charismatic as Dr. Pompfret and his thorough explanation of how she will be cutting out my piece and he will be attaching it to my father was excellent but don't ask me to explain it all other than this analogy ...your liver has all these veins like tree branches and one main like the trunk of the tree. So I get to keep the trunk and some branches and Dad gets the branches to attach to his trunk. Get it? Family tree theory here people.
Monday is the last day for Pre-op screening, Dad gets an MRI and than we get lab work. Family meeting with Dad's team and a meeting with my surgeon and than it is GO TIME!!! My son Tommy who just became an EMT will be my point person for my friends and Mom's side of the family, Lynne will be left with just having to be present and taking in the information for herself as my brother Norman and my Aunt Sheila will be the point person for my Father. It is time for Lynne to take break and just be a worried wife and stepmum without having to tell our story over and over again. On Wednesday the day of my surgery and for the next week while I recover my blog will be updated by Elizabeth Shaw, a kindred who shares my love for babble, humor and deep thoughts and will no doubt be telling stories of my drug induced "stupid talk" with you.
The intent of this blog was to educate, inspire, make you laugh, keep you informed and most of all keep me sane. So far my intentions have been well received , I hope it opens the door for others to share their stories on my blog with all the candor as I have and for those that are seeking a real perspective and not just the clinical perspective find their way here. It is also my intent to become an active advocate for the Live Liver Donation Program for the Lahey Clinic in any capacity that I would be needed. If telling my story, our story can possibly save the life of another human being I will climb the highest soap box necessary...with my Denise and the rest of my Lahey People of course...
Merry Christmas Everyone!!!!
GO TIME!!!!!! (pg11)
It has been confirmed that Wednesday 12/29/2010 is the date that I will be (or rather the surgeons) delivering a piece of my Liver to my Father. For those of you that don't know what today is.....well it is Winter Solstice, the day when we get a little more light..and I believe that you can not get any brighter than this very moment. I can not think of a better Christmas gift to ever give anyone than a piece of yourself in any form. It is has been my honor thus far to say I have given a life, changed a few lifes and now I get to save a life with some help from my Lahey Buddies.
Well that's it for now.....still trying to wrap my head around all of this...I shall write more later when I talk to Denise again and get the particulars of the Pre-op Day...whoa I am at a loss for words right now...and yup I am crying but not because I am sad or scared....just because............
Ready.......Set..............ALMOST (pg10)
Well this is the end of testing!!!! (Totally Dancing in my head)
Lynne and I made the trek today back to Lahey, I was armed with my Vagina Monologue. We arrive at exactly 945am and was immediately taken into that room... ladies know that "room", the nurse takes my BP asks some basic questions and says ok you can undress and put on this. Haha I look at her say umm no I am here for a consult only. Long story short, Barbara the mid level practitioner comes in, we chat. She at first was not so willing to listen, then I stopped her told her to hear me out and I continue my monologue. In the end I prevail, she agrees that there was no further need to exam nor test me and sends her recommendations to Denise. I head back out the waiting room, high five Lynne (more like low five, cause umm it is the Gyno office, no one high fives in a Gyno office,lol). Next stop my buddy Maria, we share some vertical smile giggles ( she taught me a new non medical term, did I mention Maria is hysterical!!) Now it is Stress test time, I learned a lot about my heart an how it beats and works while having a probe jammed into my rib cage, cause the pesky lung gets in the way when they are trying to take pictures. I do some gerbil time on the treadmill and than have more pictures taken of my heart at 180 beats per minute. I am told I run high, (my resting rate is 90 to 100) Really!?! me running at high speed all the time?? No way!?! lol. Hmm I learned some stuff today I suppose and I got to see my heart...tehehehe Barbara the heart picture lady said I had a beautiful heart and Valerie the treadmill chick was pretty funny too, she was pleased that at 180 I was not out of breath. That my friends is what NOT smoking and having Lynne in my life helps with. Have you ever been walking with Lynne??? Seven miles people, all up hill, in the snow with no coat.....lololol...I am kidding but some of it is true. Today was a good day!! Lynne and I met with Denise, laughed a lot, took some pictures and learned I AM CLEAR TO DONATE!!!!!!!!
I will have definitive answers after my team meets tomorrow.
Longest ride home today, Lynne and I talked about everything but what we just learned, so as to not jinx it and because it is so overwhelming and crying was not an option due to crappy driving conditions and HELLO!!! It is New England people it snows, boneheads and over zealous drivers crashing into each other...aaaarrgg!! Buy a Jeep people and stay off the phone your not that important!!
I truly am excited, nervous, grateful, and I think I am not sure but I think I am little shocked that my next return to Lahey will be for "the merger" when the Donor and Recieptant Family sits down and learns all that they need to know while Dad and I are in surgery, I will be sleeping so I do not really need to know every detail, thanks! Dad and I also get Pre-op testing and officially consent to surgery.....whoa it's almost GO Time...stay tuned!!
Breathing with a sigh of WTF!! (pg9)
This journey has been the longest road I have ever walked, usually I like to run through things get it over with but ummm ya this not so easy. After being really aggravated with being dictated to about having to see another doctor for some tests that make no sense, when my own doctor has cleared me I am almost not so pissed today.
So the story goes like this, I get a call from Maria telling me I need to see their OBGYN, mind you I have never met this doctor and have had my own OBGYN for 20 years and recently got a full battery of testing that was not fun to say the least, but cleared me of anything that would hinder this process. I turned over my records and reports to Lahey, but because there is no OBGYN on my "team" and no one to interpret or understand my reports from my OBGYN they felt that I should see one of their OBGYN's and they schedule the appointment with out consulting me about it!
O HELL NO, I have been poked,prodded, have had every test on the planet, major amounts of blood drawn, got a needle shoved in my chest, breast exam, and not to mention the other cavity probes and now they want me to go through an exam with some stranger to end up with the same results that I already supplied. So I pose the question, Why cant you just walked down the hall with my records and show an OBGYN on your staff so they can explain it to the "team" and not put me through this intrusive testing that you already have results from? The answer....alot of well blah blah....really no answer.
One thing I learned at the beginning of this process was that you need to ADVOCATE for yourself becuase if you don't you are allowing them to dictate the whole process. Afterall it is your body that they are turning you into a guinea pig. I cant help but feel that it is about billable insurance money. I spent yesterday on my soap box with my Dr. Kristen from Lahey and email Denise with more of my rant. I expressed that I will refuse an examination but will allow a consult with their OBGYN and if any examinations have to be done that it must be done by my doctor, ummm hello it's my VAGINA I get to chose who see's it don't I? Besides not like I will transmitting a chance of pregnancy or menstruation to my father via Liver...really people this is just ridiculous and is prolonging getting us to the date of transplantation surgery. So far every test I have taken at Lahey I am deemed fit to donate...but for the last week I have had acid reflux, a headache and I think I got about 6 nerves that are not shot yet, I am straight out bitched out at this process this week and on Monday will be calling my OBGYN and telling her what is going on and hopefully have her speak to someone on my "team". I have been a dutiful servant to this process I have accepted everything they have thrown at me but this has gone to far and it is a bit insulting. My OBGYN's care for 20 years has been more than adequate and just because she is from New Bedford does not make her less of a Doctor, I feel there is some ego tripping going on here too. Either way I own my Vjayjay and unless they can prove to me that there testing is better than what I have already endured that proved I was cancer free they need to step down and get us on the table to Deliva da Liva already....So I sit here taking deep breaths and sighing as I re-read some of the emails and think o WTF..I am gonna throw on my pink bunny suit and run in traffic with scissors....or just get me a scalpel and I will deliver the liver myself...lol...seriously like I said before this process is not for the meek, you gotta be able to rant, stand for yourself and still find a way to laugh!!
So the story goes like this, I get a call from Maria telling me I need to see their OBGYN, mind you I have never met this doctor and have had my own OBGYN for 20 years and recently got a full battery of testing that was not fun to say the least, but cleared me of anything that would hinder this process. I turned over my records and reports to Lahey, but because there is no OBGYN on my "team" and no one to interpret or understand my reports from my OBGYN they felt that I should see one of their OBGYN's and they schedule the appointment with out consulting me about it!
O HELL NO, I have been poked,prodded, have had every test on the planet, major amounts of blood drawn, got a needle shoved in my chest, breast exam, and not to mention the other cavity probes and now they want me to go through an exam with some stranger to end up with the same results that I already supplied. So I pose the question, Why cant you just walked down the hall with my records and show an OBGYN on your staff so they can explain it to the "team" and not put me through this intrusive testing that you already have results from? The answer....alot of well blah blah....really no answer.
One thing I learned at the beginning of this process was that you need to ADVOCATE for yourself becuase if you don't you are allowing them to dictate the whole process. Afterall it is your body that they are turning you into a guinea pig. I cant help but feel that it is about billable insurance money. I spent yesterday on my soap box with my Dr. Kristen from Lahey and email Denise with more of my rant. I expressed that I will refuse an examination but will allow a consult with their OBGYN and if any examinations have to be done that it must be done by my doctor, ummm hello it's my VAGINA I get to chose who see's it don't I? Besides not like I will transmitting a chance of pregnancy or menstruation to my father via Liver...really people this is just ridiculous and is prolonging getting us to the date of transplantation surgery. So far every test I have taken at Lahey I am deemed fit to donate...but for the last week I have had acid reflux, a headache and I think I got about 6 nerves that are not shot yet, I am straight out bitched out at this process this week and on Monday will be calling my OBGYN and telling her what is going on and hopefully have her speak to someone on my "team". I have been a dutiful servant to this process I have accepted everything they have thrown at me but this has gone to far and it is a bit insulting. My OBGYN's care for 20 years has been more than adequate and just because she is from New Bedford does not make her less of a Doctor, I feel there is some ego tripping going on here too. Either way I own my Vjayjay and unless they can prove to me that there testing is better than what I have already endured that proved I was cancer free they need to step down and get us on the table to Deliva da Liva already....So I sit here taking deep breaths and sighing as I re-read some of the emails and think o WTF..I am gonna throw on my pink bunny suit and run in traffic with scissors....or just get me a scalpel and I will deliver the liver myself...lol...seriously like I said before this process is not for the meek, you gotta be able to rant, stand for yourself and still find a way to laugh!!
Seriously!?! (pg8)
So I just got a call from my buddy Maria, she schedules all the doctor's appointments and she informs me that next Monday I have to meet with an OBGYN before I have my stress test. "What!??!" Well I thought I only had to do this Stress test and than be done with all the testing. Ya, not in my world. I am like Murphy's Law of Donor's for shit sake!! Every time I think I am done, I get told I need another test. Don't know why I need a OBGYN test, my Dating life has been dead for over a year, so much so I am contemplating hanging out in Airport Security and pick a good one from the their scans!! Baby Factory is closed too!! Good thing I am having a Stress test after this appointment, I think I will stay on the tread mill for 3 hours!! I am beyond frustrated today, being poked and prodded, yes it is all for the greater good but seriously this plays on you. I am healthy, but all this testing is making me feel like I am the one that has the liver disease, let alone the fact that I am sick today, friggin Mother Nature thinks she is funny. Like my Shitty weekend was not enough!?! Poor Denise, my Nurse I just vented to her for 20 minutes. One thing I know for sure, I have had every test known to man and woman, and every test I take comes up NEGATIVE!!! Apparently the Auto Immune Marker test that I turned up positive on is inconclusive at this point. This Journey is surely not for the meek, I have already had some breakdowns like a scared 5 year old, and today I am just plain 'ole bitchy!! There are moments when I feel saying I quit, this just sucks and I have had enough Johnny wearing exposing my self to being touched without a KISS first, but even with all my frustration and the cold hands and probing instruments I just think, Dad can't even walk to get the garbage barrel blowing across the street and I am bitching???
Phase 1 (pg2)
Phase 1 to become a donor, first you have to contact Denise Moran at Lahey, get a consent form and the form with the list of blood work needed. You need to go to your doctors office for this blood work at your expense, some insurances will pay for it. If you pass Phase 1 the Recipients Insurance picks up the tab from Phase 2 forward. So off I go to my doctors office to get my first blood work done. 8 tubes of blood were drawn from me. I honestly do not know what they all mean, except one I know is to make sure my blood clots properly. Spoke with the Live Donor Nurse Advocate at Lahey, Denise and completed the phone assessment, let me just say if you are really private person and are shy discussing yourself you probably want to rethink this process, cause she asks you everything. Denise thus far is great and she makes me laugh.
Results are back from Phase 1 I have a green light to move on to the Second Phase of the Live Liver Donor testing. Very excited really hope this will all be over for Christmas. They are scheduling my appointments for Phase 2 testing.
11/04/2010 Phase 2 Part 1....I met with my Team that will walk with me through this whole process at Lahey Clinic. My Dad and Stepmum Lynne were with me to meet the team too. Denise Morin, MSN RN, my nurse, ( we have bonded as we share the same sense of humor, I refer to her as Chicky), I promised her that once we get to the surgery part I shall bring her "comfy house pants" so she can hang with me in my hospital room for the week I am there.
Dr. Elizabeth Pomfret, MD, PhD, FACS, my surgeon, fellow Scorpio, meeting with her and her thorough explanation I feel confident that this woman will be the hands of an Angel that is needed to get me through this surgery with out a worry. If I said I was not scared I would be lying... this is scary. I have never had so much as stitch in my life and I am going to allow Dr. Pomfret to put an 6 to 8" slice in my abdomen and literally turn me into chop liver..
After along day of meeting the entire team that will be holding my hand from here on out, I then had to go down to the lab for blood work and ...whoa they took 21 vials of blood out of me! I believe I have been tested for every type of possible ailment known to man!
Might I suggest if you walk into a curtained room with 2 young women and one is instructing another..ummm ya ask for a skilled phlebotomist especially when you are holding a paper that is a mile long and they look at you, smile and say "Wow, this is a great one to learn on!" Seriously are you kidding me? O ya she sticks me once, says "feel a pinch" more like a bite from a Garter Snake (yes I know what that feels like too) So now I sit watching my blood pour out of my arm and I am experiencing "dead hand". My hand is cold, numb and blue. This can't be good I was thinking. So me of course I ask, the answer from the Experienced one "O uhuh that happens all the time, especially with all we are taking from you. All in all it was not a bad day, just alot of information. Next event is the Liver Scan.
Nov 6th 7am. Once again My Dad, my stepmum and Me are at Lahey after an hour and half ride in the pouring rain and I am outfitted with a very nice Johnny outfit. I am brought into the room for the liver scan, this part is easy, until they pumped me with the dye contrast. They tell you that you will feel warm and you might feel like your going to pee, but trust me you won't. I told the Rachel (was my techs name) "hey if I pee, I am wearing your clothes and someone will clean it up". When the dye was pumped it was like a hot rush that starts at the top of your head to your toes and o yes you feel like your peeing. It is the weirdest very very warm feeling that until you have experienced it, you just cant explain it. It is one of the moments when you talk about to someone who has had you both say "ya ya wasn't that weird" O and they ask you if you are allergic to shell fish because of the iodine content in the dye, well I have never tested positive for any allergy so I said no. Haha as I am laying on the gurny after wards I broke out in hives, Betsy my nurse that day brings some random doctor to check me out, Doc says give her 50mg of Benadryl. Ah yes Ben A. Dryl my new boyfriend, I was so high when I left that place that according to my parents they took me to McDonalds where I inhaled a cheeseburger and fries, and I babbled all the way home. It was about 8pm that night that I was semi sober. The rest of the weekend was a blurr, Ben really makes you sleep for two days.
Now we sit and wait, if I pass Phase 2 Part A I move on to the rest of the testing so....WAITING..tap, tap, tap....
11/19/2010 Just got word that we have the Green light for me to move on to the next phase, and that my liver is big enough to give my father 60% of mine. Whoa..almost expected to hear it was not and this was not going to happen. Just said this out loud to my Dad and I sat and cried for a few minutes, called my Stepmum at work made her cry too. This is very overwhelming on so many levels cant even find words at the moment and me being at a loss is kinda rare...
11/24/2010:
Since it is the holidays and next week will be spent at the Lahey Clinic for 3 days...I will telling this story once to my family on Thanksgiving and for the rest of you I wanted to you know so you are up to speed were we are. I hope to one day just be telling good news and not this scary crap....
I just received word that my "marker" tests where they took 21 vial of blood from me I came up positive on 4 for 4 markers for an autoimmune disease. Autoimmune Diseases (and NO HIV/AIDS IS NOT IN THIS LIST) are most often hereditary and since I come from a family that only gets to a place of knowing after some thing major has happened it is any one's guess what it may be. It could be Lupus, RA, Celiac disease, Crohn's disease, Ulcerative colitis and the list continues however I am assured that what ever it is it will be treatable, however depending on the severity of my disease I may not be able to donate to my father. However because I have come this far Lahey will continue to test me to rule out or in what my ailment maybe and treat me. My father is now on the National Donor list, so he may get a cadaver donor after all and the insurance would be forced to pay for it if I am not a viable donor any more.
So from the Dec 1st through the 3rd I will under go major testing including a liver biopsy and by Monday the 6th we will have a definitive answer. Of course I am praying it is a strictly a GI issue and my liver is completely unaffected but I would be lying if I did not admit that this is some scary stuff...all the way around. I will say that the only up side to any of this is for some of the tests Lahey encourages Valium..seriously who knew this would be a drug of such fluffy clouds and kittens...lol....so that's the latest I will keep you all posted once I know more..thanks for all your support....for now I/we just keep dancing, laughing and giving every thing to faith that this will all work out for the best...
Results are back from Phase 1 I have a green light to move on to the Second Phase of the Live Liver Donor testing. Very excited really hope this will all be over for Christmas. They are scheduling my appointments for Phase 2 testing.
11/04/2010 Phase 2 Part 1....I met with my Team that will walk with me through this whole process at Lahey Clinic. My Dad and Stepmum Lynne were with me to meet the team too. Denise Morin, MSN RN, my nurse, ( we have bonded as we share the same sense of humor, I refer to her as Chicky), I promised her that once we get to the surgery part I shall bring her "comfy house pants" so she can hang with me in my hospital room for the week I am there.
Dr. Elizabeth Pomfret, MD, PhD, FACS, my surgeon, fellow Scorpio, meeting with her and her thorough explanation I feel confident that this woman will be the hands of an Angel that is needed to get me through this surgery with out a worry. If I said I was not scared I would be lying... this is scary. I have never had so much as stitch in my life and I am going to allow Dr. Pomfret to put an 6 to 8" slice in my abdomen and literally turn me into chop liver..
After along day of meeting the entire team that will be holding my hand from here on out, I then had to go down to the lab for blood work and ...whoa they took 21 vials of blood out of me! I believe I have been tested for every type of possible ailment known to man!
Might I suggest if you walk into a curtained room with 2 young women and one is instructing another..ummm ya ask for a skilled phlebotomist especially when you are holding a paper that is a mile long and they look at you, smile and say "Wow, this is a great one to learn on!" Seriously are you kidding me? O ya she sticks me once, says "feel a pinch" more like a bite from a Garter Snake (yes I know what that feels like too) So now I sit watching my blood pour out of my arm and I am experiencing "dead hand". My hand is cold, numb and blue. This can't be good I was thinking. So me of course I ask, the answer from the Experienced one "O uhuh that happens all the time, especially with all we are taking from you. All in all it was not a bad day, just alot of information. Next event is the Liver Scan.
Nov 6th 7am. Once again My Dad, my stepmum and Me are at Lahey after an hour and half ride in the pouring rain and I am outfitted with a very nice Johnny outfit. I am brought into the room for the liver scan, this part is easy, until they pumped me with the dye contrast. They tell you that you will feel warm and you might feel like your going to pee, but trust me you won't. I told the Rachel (was my techs name) "hey if I pee, I am wearing your clothes and someone will clean it up". When the dye was pumped it was like a hot rush that starts at the top of your head to your toes and o yes you feel like your peeing. It is the weirdest very very warm feeling that until you have experienced it, you just cant explain it. It is one of the moments when you talk about to someone who has had you both say "ya ya wasn't that weird" O and they ask you if you are allergic to shell fish because of the iodine content in the dye, well I have never tested positive for any allergy so I said no. Haha as I am laying on the gurny after wards I broke out in hives, Betsy my nurse that day brings some random doctor to check me out, Doc says give her 50mg of Benadryl. Ah yes Ben A. Dryl my new boyfriend, I was so high when I left that place that according to my parents they took me to McDonalds where I inhaled a cheeseburger and fries, and I babbled all the way home. It was about 8pm that night that I was semi sober. The rest of the weekend was a blurr, Ben really makes you sleep for two days.
Now we sit and wait, if I pass Phase 2 Part A I move on to the rest of the testing so....WAITING..tap, tap, tap....
11/19/2010 Just got word that we have the Green light for me to move on to the next phase, and that my liver is big enough to give my father 60% of mine. Whoa..almost expected to hear it was not and this was not going to happen. Just said this out loud to my Dad and I sat and cried for a few minutes, called my Stepmum at work made her cry too. This is very overwhelming on so many levels cant even find words at the moment and me being at a loss is kinda rare...
11/24/2010:
Since it is the holidays and next week will be spent at the Lahey Clinic for 3 days...I will telling this story once to my family on Thanksgiving and for the rest of you I wanted to you know so you are up to speed were we are. I hope to one day just be telling good news and not this scary crap....
I just received word that my "marker" tests where they took 21 vial of blood from me I came up positive on 4 for 4 markers for an autoimmune disease. Autoimmune Diseases (and NO HIV/AIDS IS NOT IN THIS LIST) are most often hereditary and since I come from a family that only gets to a place of knowing after some thing major has happened it is any one's guess what it may be. It could be Lupus, RA, Celiac disease, Crohn's disease, Ulcerative colitis and the list continues however I am assured that what ever it is it will be treatable, however depending on the severity of my disease I may not be able to donate to my father. However because I have come this far Lahey will continue to test me to rule out or in what my ailment maybe and treat me. My father is now on the National Donor list, so he may get a cadaver donor after all and the insurance would be forced to pay for it if I am not a viable donor any more.
So from the Dec 1st through the 3rd I will under go major testing including a liver biopsy and by Monday the 6th we will have a definitive answer. Of course I am praying it is a strictly a GI issue and my liver is completely unaffected but I would be lying if I did not admit that this is some scary stuff...all the way around. I will say that the only up side to any of this is for some of the tests Lahey encourages Valium..seriously who knew this would be a drug of such fluffy clouds and kittens...lol....so that's the latest I will keep you all posted once I know more..thanks for all your support....for now I/we just keep dancing, laughing and giving every thing to faith that this will all work out for the best...
The Perfect Storm (pg7)
12/12-13/2010
So today is Sunday it is raining like mad and the wind is about 50 to 60 mph. Got the Pats Game, Family Guy Christmas Special, The Expendables Movie and a Magnesium Citrate Cocktail. It is a perfect storm for sure. 3 hours after finishing my cocktail it begins. For the love of the gods I swear I passed donuts from New Hampshire last summer AGAIN!!! Honestly anymore I will just pass the piece of liver my father needs and skip surgery all together. I really want to know who came up with this cleansing idea. The sounds alone coming from me are scary..I am only 5' tall!! I finally I know why the nickname "Thunderbox" is used in reference to a toilet. This really is funny shit, farts are funny too but this is frightening!!!!
Lynne has opted out of this adventure today, instead my good friend Eddie and the father of our 19yr old son Tommy has been employed to drive me to Lahey.
Arrival at 1145am no waiting they take me right in, and I put on some Johnny that my right boob just did not want to stay in, lucky I had a nursing student named Katie who kept covering my wild girl. So I am laying on the gurny waiting my turn and I have to listen to a man talking shit about how his neighbor dropped dead and left him a dog, and how she left 6k in her will for the dog. Then how he broke is leg and has 26yrs of sobriety. Really!?! buddy yes this is the Shit Show but come on now I do not want to hear everyone else's shit. Next I have to hear about how some lady did not cleanse the night before very well and created a shit storm in one of the rooms. I am laying here thinking o, trust me I am CLEANED out for sure, just get me outta here!! Finally I am the fortunate one I am told because I have my own doctor who is doing my Scoping so I don't have to answer all the questions everyone else does, but am encouraged to make sure I push out all the air after...that is the nice way of saying let it rip when this over! I am also asked by the nurse "Can you take out your belly ring?" I ask her Why?, not like it is gonna be in the way, last I knew there was no scope going in through the bellybutton, unless this is something new!?!. She looks at me funny and Kristen Robson my doctor arrives and says No, you don't have to. Kristen and I have a conversation, she explains some stuff, not like you really ever want full detail about this kind of procedure but none the less they tell you. I am told that she will be taking a biopsy of my lower intestine and some thing from my stomach to figure out what my auto immune disease is. So far I know I do not have Celiac disease, the one that makes you have to live a gluten free life, thank god I don't have that. I am Portuguese I need my bread!!! 2 hours and Fent-a-friend later I am on my way home and so excited to have a piece of chocolate cake!! Next appointment is for my Stress Test and than hopefully I have every single answer whatever does or does not ail me and a surgery date to become chopped liver!!
So today is Sunday it is raining like mad and the wind is about 50 to 60 mph. Got the Pats Game, Family Guy Christmas Special, The Expendables Movie and a Magnesium Citrate Cocktail. It is a perfect storm for sure. 3 hours after finishing my cocktail it begins. For the love of the gods I swear I passed donuts from New Hampshire last summer AGAIN!!! Honestly anymore I will just pass the piece of liver my father needs and skip surgery all together. I really want to know who came up with this cleansing idea. The sounds alone coming from me are scary..I am only 5' tall!! I finally I know why the nickname "Thunderbox" is used in reference to a toilet. This really is funny shit, farts are funny too but this is frightening!!!!
Lynne has opted out of this adventure today, instead my good friend Eddie and the father of our 19yr old son Tommy has been employed to drive me to Lahey.
Arrival at 1145am no waiting they take me right in, and I put on some Johnny that my right boob just did not want to stay in, lucky I had a nursing student named Katie who kept covering my wild girl. So I am laying on the gurny waiting my turn and I have to listen to a man talking shit about how his neighbor dropped dead and left him a dog, and how she left 6k in her will for the dog. Then how he broke is leg and has 26yrs of sobriety. Really!?! buddy yes this is the Shit Show but come on now I do not want to hear everyone else's shit. Next I have to hear about how some lady did not cleanse the night before very well and created a shit storm in one of the rooms. I am laying here thinking o, trust me I am CLEANED out for sure, just get me outta here!! Finally I am the fortunate one I am told because I have my own doctor who is doing my Scoping so I don't have to answer all the questions everyone else does, but am encouraged to make sure I push out all the air after...that is the nice way of saying let it rip when this over! I am also asked by the nurse "Can you take out your belly ring?" I ask her Why?, not like it is gonna be in the way, last I knew there was no scope going in through the bellybutton, unless this is something new!?!. She looks at me funny and Kristen Robson my doctor arrives and says No, you don't have to. Kristen and I have a conversation, she explains some stuff, not like you really ever want full detail about this kind of procedure but none the less they tell you. I am told that she will be taking a biopsy of my lower intestine and some thing from my stomach to figure out what my auto immune disease is. So far I know I do not have Celiac disease, the one that makes you have to live a gluten free life, thank god I don't have that. I am Portuguese I need my bread!!! 2 hours and Fent-a-friend later I am on my way home and so excited to have a piece of chocolate cake!! Next appointment is for my Stress Test and than hopefully I have every single answer whatever does or does not ail me and a surgery date to become chopped liver!!
Liver Biopsy (pg6)
12/3/2010 Liver Biopsy Day...scared to death!! I am sissy about pain.
Well I would like to thank the Lahey Clinic for my hot male Murses Shawn and Brian as they made this quite interesting to begin with. I was given some Fentanyl mixed with some other stuff, makes you semi conscious but not..yeah good stuff!! I remember getting changed for the test and hearing the names of my friends being called, Cynthia, Elizabeth and a few more, so I took it as a sign that I was being watched over today, and I was trying to keep my big girl face on for Lynne. So I get called by Shawn he sticks my needle port thingy in my wrist cause I got a "big vein" there and I was sent to go sit out in the waiting room until my room is ready, Ya and umm Lynne she hates to look at needles hanging out of ya so I tried to cover it so she did not have to look at it.
Next I remember being in the room lots of lights, Murse Shawn and Brian...ya they were cuties and they introduce me to Lin the student Murse who looks like Long Duc Dong, o and being kinda drugged up you know I said it and had the boys laughing. I remember seeing the needle get stuck in my chest by a woman doctor who I think her name was Dr Oharryo..course I was to drugged up to know if that was really what they said her name was, but hey one of my close friends name is Oharra so the sound of this Doc's name worked for me. Next I remember waking up in a recovery room area in immense pain. Lynne was a trooper through this for sure, my pain level was an 8 (yes I understand now to explain pain by numbers, haha) and so Wendy (another great name) nurse brings me a this pill. Says "Here take this it will help with the pain" Umm, ok listen when someone hands you a white big chalky pill in a little cup you know it is not going to be good! So I take it and in a few minutes I look at Lynne and say "I gotta puke!" Lynne is feverishly looking for something for me to puke in, she finds a bowl that they used to store the sticky things they put on your chest to monitor your heart and hands it to me. Ah yes and the skeleton faced looking lady behind the nurses station is watching me vomit. Nurse Wendy arrives back and says Awe, guess Percaset does not work for you, so she hits me with some Fentanyl....and...I think I passed out.
Next I remember throwing up and eating crackers and Lynne asking me what I was doing. Apparently I had the vomit bag in one hand and a cracker in the other. My response was something like I don't know I am trying to hold something down. Remember this a drug induced memory and some hear say, I just know that Lynne did not vomit with me and she managed to get me home where the only thing I remember was my Dad saying Thank you Mel and me waking up the next day............. gotta tell ya Fent-a-friend very helpful to get through some this stuff and apparently makes for great laughter. Even though this was painful, I would do it again. The best part of this awful day was hearing my Dad say Thank you and remembering it!!
Well I would like to thank the Lahey Clinic for my hot male Murses Shawn and Brian as they made this quite interesting to begin with. I was given some Fentanyl mixed with some other stuff, makes you semi conscious but not..yeah good stuff!! I remember getting changed for the test and hearing the names of my friends being called, Cynthia, Elizabeth and a few more, so I took it as a sign that I was being watched over today, and I was trying to keep my big girl face on for Lynne. So I get called by Shawn he sticks my needle port thingy in my wrist cause I got a "big vein" there and I was sent to go sit out in the waiting room until my room is ready, Ya and umm Lynne she hates to look at needles hanging out of ya so I tried to cover it so she did not have to look at it.
Next I remember being in the room lots of lights, Murse Shawn and Brian...ya they were cuties and they introduce me to Lin the student Murse who looks like Long Duc Dong, o and being kinda drugged up you know I said it and had the boys laughing. I remember seeing the needle get stuck in my chest by a woman doctor who I think her name was Dr Oharryo..course I was to drugged up to know if that was really what they said her name was, but hey one of my close friends name is Oharra so the sound of this Doc's name worked for me. Next I remember waking up in a recovery room area in immense pain. Lynne was a trooper through this for sure, my pain level was an 8 (yes I understand now to explain pain by numbers, haha) and so Wendy (another great name) nurse brings me a this pill. Says "Here take this it will help with the pain" Umm, ok listen when someone hands you a white big chalky pill in a little cup you know it is not going to be good! So I take it and in a few minutes I look at Lynne and say "I gotta puke!" Lynne is feverishly looking for something for me to puke in, she finds a bowl that they used to store the sticky things they put on your chest to monitor your heart and hands it to me. Ah yes and the skeleton faced looking lady behind the nurses station is watching me vomit. Nurse Wendy arrives back and says Awe, guess Percaset does not work for you, so she hits me with some Fentanyl....and...I think I passed out.
Next I remember throwing up and eating crackers and Lynne asking me what I was doing. Apparently I had the vomit bag in one hand and a cracker in the other. My response was something like I don't know I am trying to hold something down. Remember this a drug induced memory and some hear say, I just know that Lynne did not vomit with me and she managed to get me home where the only thing I remember was my Dad saying Thank you Mel and me waking up the next day............. gotta tell ya Fent-a-friend very helpful to get through some this stuff and apparently makes for great laughter. Even though this was painful, I would do it again. The best part of this awful day was hearing my Dad say Thank you and remembering it!!
Phase 2 Part B Major Testing Day (pg5)
12/1/2010. Edit Pages
Today begins with the 1 1/2 drive to Lahey with my Stepmum, I drove and yup that traffic is horrible but we arrive on time for my first of many appointments today. First stop is the lab, yuk...I met with my team doctor, Kristen Robson, she is pretty great, got a full exam right down to the ole booby touching exam and she scheduled me for more blood work and a Colonoscopy and Endoscopy so that we can get a definitive answer to the autoimmune disease I may have. O boy cant wait for that!! I met with a Psychiatrist and a Social Worker and if you ever thought you were sane, ya wait cause right now I feel like a total loon!! I have no use for psychiatrists, this poor women looked like she needed a vacation. She had a 3 weeks of root growth and had to keep referring to my "notes" so she could "know" who I was. She was nice but I am not a fan of redundancy and probing questions into my childhood that have no relevance to my current life. They ask you "Is anyone pressuring you to make this decision" my answer. "Well to some degree, yes there is pressure. This is my father and I hold the piece that will give him his health back or not" So yes there is pressure and if anyone tells you there is not, well they are lying!" Ummm ya she looked shocked at my candor, but hey I tell it like it is. This scary, I am scared. I am scared for me, I have never spent more than 24 hours in hospital and that was just for the birth of my son. I have never had broken bone or a stitch so ya getting cut open and having a giant scar down the middle of my belly is scary and sort of sucks. I am a woman so vanity plays a factor here too. I am scared for my father, after all he is the one that is sick, and I have never seen my father weak in any way. I am scared for my Stepmum, who is holding on to hope and sanity by a thread. Though we have been optimistic there are so many risk factors involved. This is major surgery and for me it is elective. I am overwhelmed today, but keeping it together as I listen and absorb all that I am being poked and prodded about. Yup gonna have a good cry tonight cause the truth is even with all the support in the world there is a scared little girl in me that just needs to cry for the sake of crying.
Today begins with the 1 1/2 drive to Lahey with my Stepmum, I drove and yup that traffic is horrible but we arrive on time for my first of many appointments today. First stop is the lab, yuk...I met with my team doctor, Kristen Robson, she is pretty great, got a full exam right down to the ole booby touching exam and she scheduled me for more blood work and a Colonoscopy and Endoscopy so that we can get a definitive answer to the autoimmune disease I may have. O boy cant wait for that!! I met with a Psychiatrist and a Social Worker and if you ever thought you were sane, ya wait cause right now I feel like a total loon!! I have no use for psychiatrists, this poor women looked like she needed a vacation. She had a 3 weeks of root growth and had to keep referring to my "notes" so she could "know" who I was. She was nice but I am not a fan of redundancy and probing questions into my childhood that have no relevance to my current life. They ask you "Is anyone pressuring you to make this decision" my answer. "Well to some degree, yes there is pressure. This is my father and I hold the piece that will give him his health back or not" So yes there is pressure and if anyone tells you there is not, well they are lying!" Ummm ya she looked shocked at my candor, but hey I tell it like it is. This scary, I am scared. I am scared for me, I have never spent more than 24 hours in hospital and that was just for the birth of my son. I have never had broken bone or a stitch so ya getting cut open and having a giant scar down the middle of my belly is scary and sort of sucks. I am a woman so vanity plays a factor here too. I am scared for my father, after all he is the one that is sick, and I have never seen my father weak in any way. I am scared for my Stepmum, who is holding on to hope and sanity by a thread. Though we have been optimistic there are so many risk factors involved. This is major surgery and for me it is elective. I am overwhelmed today, but keeping it together as I listen and absorb all that I am being poked and prodded about. Yup gonna have a good cry tonight cause the truth is even with all the support in the world there is a scared little girl in me that just needs to cry for the sake of crying.
Dad's Appointment 9 (pg3)
11/29/2010 Lahey today for Dad, I met his Pulmonary Specialist Tim Lieasching who tells some pretty dry analogy jokes, however for the 1st time I finally understood that my Dad's breathing is progressively getting worse and the Doctor does not want him doing anything more than walking from the porch to the mailbox. Needless to say I had to wheel my father out in a wheelchair. Poor guy I almost got his ankle torn off in the elevator, yeah I suck at wheel chair driving. Though both of us laughed about the whole wheel chair driving disaster, still I knew that this was NOT what my father wanted, his daughter to be pushing him in a wheelchair, after all my father is way more active than I ever was, he skis and sails and keeping up with my super sport Stepmum is way more than I could ever do. There is a certain sadness that is hard to explain unless you are standing in these moments, but you try and you have to keep pushing for the laughter to get you through to the next day.
Perspective... Some Results... (pg4)
12/1/2010 Well after having been told what I felt was a terrible news and completely made me fall apart. Honestly after going through so much testing and being told I have auto immune disease was scary for me and I was sad for my father, thinking great I got his hopes up and my family and now I can't give him his health back cause I got something broken with me. It was about to get even more overwhelming. I was not mentally prepared for what was to come next with the testing in Phase 2 part B. The worse for me was having my Stepmum with me the whole time, while I love her and she is my best friend of 27 years I might add, this is way to much for her. I mean think about it, she has to be strong for my Dad and has attended all most all of his doctors appointments and has heard every worse case scenario. She has had to find some way to keep a balance and if she does not end up in a rubber room after all this is will be a miracle, of course we all joke that perhaps we should sit around and pop some Benadryl and have a giggle feast. She is the strongest woman I know and thank god she has a sense of humor cause between my father and I we are pretty twisted. This process is so over whelming that some days I think that to survive this you need a sense of humor, which they should probably tell you this when they tell you "hey you need a new organ". Not sure how other people get through this with out laughter. So it begins steps closer to knowing will I or won't I.
The Beginning (pg1)
Our most basic instinct is not for survival but for family. Most of us would give our own life for the survival of a family member, yet we lead our daily life too often as if we take our family for granted. ~ (Paul Pearshall)
This blog is dedicated to all the Family and Friends that have been affected and effected by Liver Disease of any kind. This is my story, our story of how we learned what the disease was and the journey we embarked on for my father's cure...
This blog is written from my perspective as the Live Living Donor volunteer. I am donating a piece of my liver to my father, Who am I? I am friend, a sister, a mother, a cousin, a comedian by nature, a semi optimist mostly realist, an observer, a babbler, a writer, a dreamer and Greg's daughter. I am also determined to give a voice to those that are afraid to use theirs because of the stigma of "liver disease". I hope that everyone who reads this gets a little educated, laughs a little and know that if you are in this situation there others like you in the world.
My father has been diagnosed with Hepatopulmonary syndrome: it is a syndrome of shortness of breath and hypoxemia (low oxygen levels in the blood of the arteries) caused by vasodilation (broadening of the blood vessels) in the lungs of patients with liver disease. Dyspnea and hypoxemia are worse in the upright position. Which is why my Dad is always laying down these days, he can barely make it to the door with out it seeming he ran 15 miles. He also has NASH compounded with the a fore mentioned. Nonalcoholic steatohepatitis or NASH is a common, often “silent” liver disease. It resembles alcoholic liver disease, but occurs in people who drink little or no alcohol. The major feature in NASH is fat in the liver, along with inflammation and damage. Most people with NASH feel well and are not aware that they have a liver problem. Nevertheless, NASH can be severe and can lead to cirrhosis, in which the liver is permanently damaged and scarred and no longer able to work properly. We were informed that my Dad may have had this condition for years and we/he never knew it.
Now that I have given you the condensed version of his disease, this is where we begin. First let me say I am astonished as to how ignorant we all can be about things until they happen to you, whats interesting is that when you say liver disease everyone always assumes you are a drinker or were an alcoholic and as you just read that is not always the case. We found out my father had this condition after he was found to have a heart condition and led him to have a double bi-pass in June 2009, after his Bi-Pass he had many complications and almost did not survive, which was very frightening to say the least. We were advised that he may have a liver disease of sorts but they never really elaborated, there were whispers than that he would need a liver transplant and I already said I would do what ever was needed. Never really knowing what was about to come. Obviously my father had continued his doctors appointments and on May 19th 2010 it was confirmed that he would need a liver transplant because his breathing would get worse and at the time they advised him to stay on Oxygen for 24/7. As scary as it was to hear this, we were confident that he would get a cadaver donor, as that was the impression we were all under. We also learned that we live in Region 1 for Organ Transplantations, meaning my father's disease would need a high MELD score (Model for End-Stage Liver Disease, or MELD, is a scoring system for assessing the severity of chronic liver disease) to get onto the national donor list and the supply does not meet the demand for organs. They said might be best to move to a state like Florida to get a faster transplant....ya ok, cause that's what you want to hear while your trying to process everything else. Needless to say his score was a 22 which would get him there,and because his blood type is B, he was consider rare and his wait for a cadaver donor would not be to long. Well that was what were told and felt confident about. To make a long story short we learned in August that his insurance would not cover a cadaver donor they would only pay for a live liver donor. Now seriously I could on and on about this bureaucratic bullshit and since I do not work or have never been schooled in insurance bullshit it has only reinforced why I think our health care system sucks but that's another blog entirely. So after lengthy discussions and semi-arguments it was decided that I would volunteer to see if I was a match. In liver transplantation it is blood to blood match not tissue match, so I already knew I was a blood match for my Dad....and so the journey begins....
(This was my thoughts on May 19th when my father told me he needed the transplant)
Perspective: When the risk of losing the one solid person in your life has been increased by statistics and diagnosis's you realize that no self education, conversations, tears, or written fluffy words from others can ease the indelible fear that you are standing in, it is action and sometimes someone to take your hand that is necessary to help you push to the other side. I am truly blessed to have family & some amazing friends that are willing to walk the line for me..... for us.......
This blog is dedicated to all the Family and Friends that have been affected and effected by Liver Disease of any kind. This is my story, our story of how we learned what the disease was and the journey we embarked on for my father's cure...
This blog is written from my perspective as the Live Living Donor volunteer. I am donating a piece of my liver to my father, Who am I? I am friend, a sister, a mother, a cousin, a comedian by nature, a semi optimist mostly realist, an observer, a babbler, a writer, a dreamer and Greg's daughter. I am also determined to give a voice to those that are afraid to use theirs because of the stigma of "liver disease". I hope that everyone who reads this gets a little educated, laughs a little and know that if you are in this situation there others like you in the world.
My father has been diagnosed with Hepatopulmonary syndrome: it is a syndrome of shortness of breath and hypoxemia (low oxygen levels in the blood of the arteries) caused by vasodilation (broadening of the blood vessels) in the lungs of patients with liver disease. Dyspnea and hypoxemia are worse in the upright position. Which is why my Dad is always laying down these days, he can barely make it to the door with out it seeming he ran 15 miles. He also has NASH compounded with the a fore mentioned. Nonalcoholic steatohepatitis or NASH is a common, often “silent” liver disease. It resembles alcoholic liver disease, but occurs in people who drink little or no alcohol. The major feature in NASH is fat in the liver, along with inflammation and damage. Most people with NASH feel well and are not aware that they have a liver problem. Nevertheless, NASH can be severe and can lead to cirrhosis, in which the liver is permanently damaged and scarred and no longer able to work properly. We were informed that my Dad may have had this condition for years and we/he never knew it.
Now that I have given you the condensed version of his disease, this is where we begin. First let me say I am astonished as to how ignorant we all can be about things until they happen to you, whats interesting is that when you say liver disease everyone always assumes you are a drinker or were an alcoholic and as you just read that is not always the case. We found out my father had this condition after he was found to have a heart condition and led him to have a double bi-pass in June 2009, after his Bi-Pass he had many complications and almost did not survive, which was very frightening to say the least. We were advised that he may have a liver disease of sorts but they never really elaborated, there were whispers than that he would need a liver transplant and I already said I would do what ever was needed. Never really knowing what was about to come. Obviously my father had continued his doctors appointments and on May 19th 2010 it was confirmed that he would need a liver transplant because his breathing would get worse and at the time they advised him to stay on Oxygen for 24/7. As scary as it was to hear this, we were confident that he would get a cadaver donor, as that was the impression we were all under. We also learned that we live in Region 1 for Organ Transplantations, meaning my father's disease would need a high MELD score (Model for End-Stage Liver Disease, or MELD, is a scoring system for assessing the severity of chronic liver disease) to get onto the national donor list and the supply does not meet the demand for organs. They said might be best to move to a state like Florida to get a faster transplant....ya ok, cause that's what you want to hear while your trying to process everything else. Needless to say his score was a 22 which would get him there,and because his blood type is B, he was consider rare and his wait for a cadaver donor would not be to long. Well that was what were told and felt confident about. To make a long story short we learned in August that his insurance would not cover a cadaver donor they would only pay for a live liver donor. Now seriously I could on and on about this bureaucratic bullshit and since I do not work or have never been schooled in insurance bullshit it has only reinforced why I think our health care system sucks but that's another blog entirely. So after lengthy discussions and semi-arguments it was decided that I would volunteer to see if I was a match. In liver transplantation it is blood to blood match not tissue match, so I already knew I was a blood match for my Dad....and so the journey begins....
(This was my thoughts on May 19th when my father told me he needed the transplant)
Perspective: When the risk of losing the one solid person in your life has been increased by statistics and diagnosis's you realize that no self education, conversations, tears, or written fluffy words from others can ease the indelible fear that you are standing in, it is action and sometimes someone to take your hand that is necessary to help you push to the other side. I am truly blessed to have family & some amazing friends that are willing to walk the line for me..... for us.......
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